How long before Orgovyx side effects begin to arise?

Posted by csimadera1 @csimadera1, Jan 13 9:09pm

Waiting for my Orgovyx to arrive so I can begin ADT. Have a procedure on 02/19 for Fiducial markers & barrigel then wait for my schedule for RT. Was wondering on average, how long before the ADT side effects begin to arise? I understand everyone is different. Just looking to prepare myself mentally for the process.
I have declined the "2 year protocol" and opted for the initial 6 month term and see what The Good Lord drops in my lap.
Thank you guys in advance!

Interested in more discussions like this? Go to the Prostate Cancer Support Group.

The HERO study (https://www.nejm.org/doi/full/10.1056/NEJMoa2004325) goes into great detail about Orgovyx.

If your diagnosis warrants 2 years of ADT, stopping after 6 months is very risky. (The Good Lord has already allowed doctors the knowledge to know what cancers warrant 6 months and which warrant 24 months. Choose well.)

REPLY

first 30 days or so can be tough.. stay hydrated !! exercise some...you will prob start to experience hot flashes and other weirdness as your testostrone is blocked...it blocks the testostrone very well in 3 days or so and that shuts down cancer -usually.

the early days can be challenging but after that, you may find it is not too bad...If your docs recommened 24 months..I wouldnt stop at 6 months...do at least a year...you can do it !

REPLY

You don’t give us information about your actual case. If you have a Gleason score above seven and any of the aggressive issues two years of ADT may be a blessing.

Were any of these things found in the biopsy intraductal, cribriform, Seminal vesicle invasion, EPE or ECE. (Extraprostatic extensions extra capsular extensions). They can make the cancer much more aggressive.

One thing about prostate cancer is that if you let it grow, it is extremely painful. That two years of ADT could save you from that. My father died of prostate cancer and his last few weeks he was in so much pain he was on so much morphine he couldn’t communicate. This is a man who had so much pain tolerance he had his teeth ground down and crowned without Novacaine..

The good Lord, can’t save you from the pain prostate cancer can give you.

Due to their different mechanisms of action. ADT which includes Orgovyx, Firmagon, Lupron, Eligard, Prostap, Camcevi, Lucrin, Zoladex, Trelstar, Pamorelin, and Decapeptyl can cause numerous side effects. Actually due to a lack of testosterone.
Hot flashes
Fatigue
Muscle deterioration
Bone weakening
Brain fog
Depression
Weight gain
Joint pain
Difficulty in breathing

Not all of these side effects occur to everyone on the drugs. Most of them are just things you have to be aware of and circumvent. I run on the track twice a day, 1 mile at least, to help prevent bone weakening, fatigue and muscle deterioration. I also go to the gym three days a week (usually) and spend an hour with all different types of weight exercises. One thing that happens is people get a beer belly from the muscle deterioration, I do a lot of sit-ups to offset that.

Some people get depression but it is not common. It is easily treatable, according to people that have reported it on here and on Online Meetings I have participated in. If he has that problem Come back and ask for help, Or see a psychiatrist about doing something to relieve the depression.

Some people get no hot flashes at all. Others only have a few hot flashes and they are very minor. I had severe hot flashes for the first year on Lupron. As a hot flash was hitting I would feel a lot of fatigue. After a year, my oncologist prescribed a depo-provera shot every three months and it really stopped those hot flashes on Lupron. There are other hormones that can do this, speak to your doctor.
I know one person that says eating tofu every day really controlled his hot flashes, another person in this forum said the same thing. Tofu does have properties similar to endocrine hormones but a lot weaker. Can’t hurt to try it. Seems they ate it daily.

According to a doctor that spoke to a recent webinar, many people on ADT, if they are staying on ADT for an extended period or have become castrate resistant should be taking bone straighteners. I took Fosamax for six years and I’m now on Zometa. That along with calcium taken daily helps keep your bones strong. Ask your doctor about this.

I have never gained any weight while on ADT. I get on the scale every morning and base what I eat on what I weigh. Skip lunch at times.

REPLY

Hubby's side effects started on the second day and he had a rough 2 weeks. But after about 2 weeks, his body got used to it and things were much better.

REPLY
Profile picture for jeff Marchi @jeffmarc

You don’t give us information about your actual case. If you have a Gleason score above seven and any of the aggressive issues two years of ADT may be a blessing.

Were any of these things found in the biopsy intraductal, cribriform, Seminal vesicle invasion, EPE or ECE. (Extraprostatic extensions extra capsular extensions). They can make the cancer much more aggressive.

One thing about prostate cancer is that if you let it grow, it is extremely painful. That two years of ADT could save you from that. My father died of prostate cancer and his last few weeks he was in so much pain he was on so much morphine he couldn’t communicate. This is a man who had so much pain tolerance he had his teeth ground down and crowned without Novacaine..

The good Lord, can’t save you from the pain prostate cancer can give you.

Due to their different mechanisms of action. ADT which includes Orgovyx, Firmagon, Lupron, Eligard, Prostap, Camcevi, Lucrin, Zoladex, Trelstar, Pamorelin, and Decapeptyl can cause numerous side effects. Actually due to a lack of testosterone.
Hot flashes
Fatigue
Muscle deterioration
Bone weakening
Brain fog
Depression
Weight gain
Joint pain
Difficulty in breathing

Not all of these side effects occur to everyone on the drugs. Most of them are just things you have to be aware of and circumvent. I run on the track twice a day, 1 mile at least, to help prevent bone weakening, fatigue and muscle deterioration. I also go to the gym three days a week (usually) and spend an hour with all different types of weight exercises. One thing that happens is people get a beer belly from the muscle deterioration, I do a lot of sit-ups to offset that.

Some people get depression but it is not common. It is easily treatable, according to people that have reported it on here and on Online Meetings I have participated in. If he has that problem Come back and ask for help, Or see a psychiatrist about doing something to relieve the depression.

Some people get no hot flashes at all. Others only have a few hot flashes and they are very minor. I had severe hot flashes for the first year on Lupron. As a hot flash was hitting I would feel a lot of fatigue. After a year, my oncologist prescribed a depo-provera shot every three months and it really stopped those hot flashes on Lupron. There are other hormones that can do this, speak to your doctor.
I know one person that says eating tofu every day really controlled his hot flashes, another person in this forum said the same thing. Tofu does have properties similar to endocrine hormones but a lot weaker. Can’t hurt to try it. Seems they ate it daily.

According to a doctor that spoke to a recent webinar, many people on ADT, if they are staying on ADT for an extended period or have become castrate resistant should be taking bone straighteners. I took Fosamax for six years and I’m now on Zometa. That along with calcium taken daily helps keep your bones strong. Ask your doctor about this.

I have never gained any weight while on ADT. I get on the scale every morning and base what I eat on what I weigh. Skip lunch at times.

Jump to this post

@jeffmarc
I REALLY appreciate your informative responses and find you very helpful in making decisions for my treatment.

REPLY
Profile picture for csimadera1 @csimadera1

@jeffmarc
I REALLY appreciate your informative responses and find you very helpful in making decisions for my treatment.

Jump to this post

@csimadera1
oh, had a biopsy 16 specimens, 3 were GL 7 4+3, the rest were 3+3 or less, SVI, PSA 59 which is the concern. Declined surgery, urologist & RadOnc both agreed. 5 week course of RT w/ ADT.
Actually looking forward to beginning treatment so I can get through this. Thank you for your input.

REPLY

I started Orgovyx about 2 1/2 months ago. My libido went away within 2 weeks. I’ve had some mild hot flashes but very manageable. I’m terrified of muscle loss so I’ve been working out like a fiend and I think I’ve actually gained muscle mass and definitely have gotten stronger. At least I was…

I just finished my radiation treatment and the last week or so has really taken a toll on me and I haven’t been able to get to the gym as often as I could and have already seen a difference. It goes away quick! Starting to see that beer belly. But that will change tomorrow!

If you haven’t already, I would highly suggest starting a weight training program as well as cardio workouts. If necessary, a few sessions with a personal trainer might be a great investment. Best of luck!

REPLY
Profile picture for shmo @shmo

I started Orgovyx about 2 1/2 months ago. My libido went away within 2 weeks. I’ve had some mild hot flashes but very manageable. I’m terrified of muscle loss so I’ve been working out like a fiend and I think I’ve actually gained muscle mass and definitely have gotten stronger. At least I was…

I just finished my radiation treatment and the last week or so has really taken a toll on me and I haven’t been able to get to the gym as often as I could and have already seen a difference. It goes away quick! Starting to see that beer belly. But that will change tomorrow!

If you haven’t already, I would highly suggest starting a weight training program as well as cardio workouts. If necessary, a few sessions with a personal trainer might be a great investment. Best of luck!

Jump to this post

@shmo
Be aware of the fatigue you may feel from taking the ADT drug can be offset by exercise. It sounds counter to logic, but getting out there and exercising seems to offset the fatigue for most people.

REPLY
Profile picture for shmo @shmo

I started Orgovyx about 2 1/2 months ago. My libido went away within 2 weeks. I’ve had some mild hot flashes but very manageable. I’m terrified of muscle loss so I’ve been working out like a fiend and I think I’ve actually gained muscle mass and definitely have gotten stronger. At least I was…

I just finished my radiation treatment and the last week or so has really taken a toll on me and I haven’t been able to get to the gym as often as I could and have already seen a difference. It goes away quick! Starting to see that beer belly. But that will change tomorrow!

If you haven’t already, I would highly suggest starting a weight training program as well as cardio workouts. If necessary, a few sessions with a personal trainer might be a great investment. Best of luck!

Jump to this post

@shmo Thanks, I am somewhat active, 3 mile walk in the morning & afternoon, play wii games to stretch with 90 pushups intermittent then 40 minutes on the stationary bike before bed. Hoping for the best, preparing for the worst. Wife is concerned about the "bedroom" activity, I'm 67 shes 58, we shall see what comes up or doesn't . . . LOL

REPLY

The side effects start very quickly as it lowers the testosterone quickly. Make sure you take it EVERY day as the half-life is short on this drug. After awhile, I decided to take it at night instead of the morning and this reduced the drowsiness during the first month. After the first month or so, the only side effect was hot flashes (minimal) and getting a bigger belly. I did not exercise so that is my own fault. Starting an exercise program right away is great, even though you probably won't feel like doing this. I was on for 2 years and it went fast and I am several years out now (Gleason 8 and 9) keeping a PSA of near zero. Good luck to you!

REPLY
Please sign in or register to post a reply.